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6.1.1 Parental Questionnaire Focusing on the Coping Skills of Children with EB in Everyday Life

Parental questionnaire focusing on the coping skills of children with EB in everyday life

Name of child: Date of birth: Age: EB type: Date:

SELF-CARE

Dressing and undressing

Putting on and taking off underclothes

JJ JK KL LL

Putting on and taking off socks/stockings

JJ JK KL LL

Trousers

JJ JK KL LL

Pullover/T-Shirt

JJ JK KL LL

Shirt/jacket

JJ JK KL LL

Which types of material are tolerated best?

Cotton o silk o synthetic materials o

Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

Key

JJ JK KL LL

very well     well        poor         not at all   with help   

Please mark where appropriate The line beside the Smileys gives space for remarks or additions

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Putting on and taking off shoes

Outdoor shoes

JJ JK KL LL

Does your child use:

Special shoes o inserts o padding o

Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

Fastenings

Buttons

JJ JK KL LL

Shoelaces

JJ JK KL LL

Zip

JJ JK KL LL

Velcro

JJ JK KL LL

Does your child use any adaptive devices or adaptations to make using fastenings easier?

––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

Eating and drinking

Cutting food

JJ JK KL LL

Eating with a spoon or fork

JJ JK KL LL

Does your child use:

Special cutlery o teaspoon o

Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

Drinking out of a glass or cup

JJ JK KL LL

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Hygiene and grooming

Shower

JJ JK KL LL

Bath

JJ JK KL LL

Does your child use:

Bath board o anti-slip mat o

Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

Cleaning teeth

JJ JK KL LL

Does your child use:

Manual toothbrush o electric toothbrush o special toothbrush o

Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

Combing/brushing hair

JJ JK KL LL

Applying cream

JJ JK KL LL

Toileting (including wiping intimate parts)

JJ JK KL LL

Sleeping

Mattress/pillow/special protection

Foam mattress o sprung mattress o latex mattress o

Water bed o feather pillow o foam pillow o

Ergonomic pillow o support cushion(s) o sheepskin protection o

Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

Material of the bedclothes

Silk o cotton o

Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

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Sleeping position

Back o side o front o

Household activities

Opening a bottle

JJ JK KL LL

Opening a tin/can

JJ JK KL LL

Opening packaging

JJ JK KL LL

Preparing a snack

JJ JK KL LL

Opening and closing a drawer

JJ JK KL LL

Putting an electric plug into a socket and taking it out

JJ JK KL LL

Opening and closing a water tap

JJ JK KL LL

Shopping

Taking items off the shelf

JJ JK KL LL

Taking out coins

JJ JK KL LL

Carrying bags

JJ JK KL LL

Open the door with a key

JJ JK KL LL

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LEISURE/HOBBIES

What hobbies does your child have?

Sport o music o drawing/painting o handicraft o

Reading o friends o singing o

Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

Which kinds of sport does your child do?

Horse riding o cycling o swimming o ball games o

Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

What measures to you take to prevent blistering in sport?

Knee pads o elbow pads o   gloves o gel inserts o

Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

Is your child integrated into a group of friends?

JJ JK KL LL

Does your child take part in any club or group activities?

Which ones? –––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

What relaxation/pain reduction method(s) does your child use?

Relaxation techniques o breathing techniques o massage o

Music o sound bed o

Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

Can you go on holiday with your child?

JJ JK KL LL

Where do you go and what kind of holiday is best?

Pony club (riding) o city trip o

Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

What conditions do you and your child need when on holiday?

Bathtub o washing machine o pureed food o air conditioning o

Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

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SCHOOL

Writing with pen/pencil

JJ JK KL LL

Does your child use a special pen/pencil?

Writing on a PC

JJ JK KL LL

Does your child use any special adaptations?

Special mouse o touch screen o special keyboard o

Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

Speed of writing

JJ JK KL LL

Is the speed adequate for:

Copying from the board o dictation o tests o

Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

Turning pages of a book/magazine/newspaper

JJ JK KL LL

Using a mobile telephone

JJ JK KL LL

Using scissors

JJ JK KL LL

Does your child use special scissors?

Standard scissors o child’s scissors o

Loop/self-opening scissors o table-top scissors o

Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

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How does your child sit best in the classroom?

At the front o at the back o single place o wheelchair o upholstered chair o

Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

Does your child have any special device for sitting for long periods?

Padding o rounded seat edge on upholstered chair o

Rounded edge of table o rounded corners o

Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

Carrying a school bag

JJ JK KL LL

Does your child use assistive devices or techniques?

One set of books at school and one at home o trolley o

Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

Does your child have his/her own carer in the school?

For how many hours a day and with what conditions?

What is the best place for your child to spend the breaks in?

In the classroom o in the passage/corridor o in the playground o

Is your child integrated into class life?

JJ JK KL LL

Does your child participate in gymnastics?

JJ JK KL LL

Alternatives?

Does your child participate in handicraft lessons?

JJ JK KL LL

What activities are possible?

Is it planned for your child to stay at school beyond the minimum age?

If so with what plans?

What professional opportunities do you see for your child?

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MOBILITY

Transfer

Get into bed and get up again

JJ JK KL LL

Turnover in bed

JJ JK KL LL

Sit down on a chair and get up

JJ JK KL LL

Sit down at the table and get up

JJ JK KL LL

Sit down on a sofa or armchair and get up

JJ JK KL LL

Pick something up from the floor

JJ JK KL LL

Get in and out of public transport

JJ JK KL LL

Locomotion

Walk

JJ JK KL LL

How far?

Run

JJ JK KL LL

How far?

Go up and down stairs

JJ JK KL LL

Cross the street within the time span of the green light

JJ JK KL LL

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Tricycle

JJ JK KL LL

Scooter

JJ JK KL LL

Does your child use any special adaptations?

Safety scooter o special handlebars o

Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

Balance bike

JJ JK KL LL

Bicycle

JJ JK KL LL

Does your child use any special adaptations?

Balancing wheels o special handlebars o backpedal brake o gel saddle o

Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

Do you use a wheelchair?

Yes o no o

Do you use any special adaptations?

Electric wheelchair o special cushion o

Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

How does your child go to school?

Private car o school bus o public transport o bicycle o on foot o

Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

Taking your child in the car

Do you use any special adaptations?

Child safety seat o padded seatbelt o air conditioning o

Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

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